School Volunteer Dismisses Neuromuscular Disease, Gives Back [VIDEO]

One local grandmother says her volunteer work at is "ordinary" and "something all parents should do." But what this Portsmouth resident has accomplished while living with a neuromuscular disease is anything but ordinary. 

"It's just fun to be in the classroom with the kids. As long as I don't do anything physical...it's fine," says longtime Portsmouth resident Kathryn Allen, who has lived with the neuromuscular disease Myasthenia Gravis since she was a child.

Myasthenia Gravis, also referred to as simply MG, "is a chronic autoimmune neuromuscular disorder that is characterized by fluctuating weakness of the voluntary muscle groups," according to the Myasthenia Gravis Foundation of America Web site. 

About 20 people out of every 100,000 in the United States are estimated to have MG. However, the number is expected to be higher since the disorder is commonly misdiagnosed, according to Allen's daughter. 

"Myasthenia Gravis is caused by a defect in the transmission of nerve impulses to muscles. It occurs when normal communication between the nerve and muscle is interrupted at the neuromuscular junction—the place where nerve cells connect with the muscles they control," according to the National Institute of Neurological Disorders and Stroke.

There is currently no cure for the disorder, which can affect people of all age, race or gender. 

"Luckily, I got better. So many people get worse. There's so many variables with this disease," Allen says. 

"I'm lucky I've been able to lead a pretty normal life, going to school, college, have a nice job and have two wonderful children, which can be very dangerous since they didn't know what could happen with being pregnant." 

Allen was only six months old when she was diagnosed. Her family believes she is the youngest person to ever have been diagnosed with Myasthenia Gravis in the United States. 

"I was diagnosed by a doctor at the Chelsea Naval Hospital in Chelsea, MA, and then they referred my mother to Massachusetts General Hospital. They actually had to create a medicine for me to take since it was all pills," she said. 

Allen says her mother took her to the doctor after witnessing her daughter's "droopy eye," a common sign of the disease.

Her life had some challenges, but she's led what her family calls a "normal" life.

"Other than those extra activities, like throwing a baseball and running a marathon, she's lived a very normal life," says her now adult daughter, Christina Richardson. 

In school, she couldn't play sports or attend physical eduction classes.

"Any repetitive motion, really, makes your legs weak," she says. Allen attended Portsmouth schools and graduated from Bryant College (later known as Bryant University), earning an associate degree.

She was a longtime civilian employee for the U.S. Navy, retiring as an administration officer after 30 years. 

"They then asked her to come back for awhile as a contract employee and she retired again," said Richardson. 

For the past four years, Allen has spent her spare time volunteering at Hathaway Elementary School in Portsmouth. She assists teachers in the classroom, reads to students and helps youth with their homework. However, she's become more than a volunteer, says her daughter, and has taken on a "grandmother" role. 

"She's gone above and beyond," Richardson says. 

The Portsmouth grandmother says she doesn't perform physical work, like stacking books in the classroom, but sits down with students and will help them with homework or reads to them. 

The Portsmouth resident also says students will sometimes stare or "look at you funny."

"Your eyes cross," Allen says. "I know, in a classroom, a lot of the kids look at me. You can tell they are wondering if something is wrong. Some kids say something and other kids just look at me." 

Richardson says some kids will ask her daughter about it, which the 9-year-old granddaughter just replies, according to her mother, "What are you talking about? My grandmother is wonderful and happy." 

Allen and Richardson plan to attend the MG Walk in Boston in May to raise money to find a cure for MG. 

For information about the walk and how you can donate, check back with Portsmouth Patch for the full story or check out their donation page here. 

For more information about Myasthenia Gravis, visit the MG Foundation of American Web site here.